Neonatal Intensive Care Unit Awareness Month-- Stories from NICU Moms

Neonatal Intensive Care Unit Awareness Month-- Stories from NICU Moms

Posted by Spoonie Threads Staff on

September is the month to honor NICU families and the health professionals who care for them.

Learn more about Neonatal Intensive Care Unit Awareness Month in this week's latest blog as two mothers share their stories. 

Toddler boy in a black chair with tray

Meet Ethan, as introduced by his mother, Lisa and sister Serenitie: 

My handsome son, Ethan Marshall Collins, was born one week before my scheduled C-section on March 24, 2014. He weighed 7 lbs,3 oz, and was 21 inches long. My pregnancy was beautiful. Nothing seemed out of the ordinary. 

March 24 marked a turning point in our lives. That day, I was sent from the emergency department to the operating room. Ethan was born with only 10% oxygen levels and was whisked right off to the NICU. I was not able to see him until I came out of the recovery room. When I finally saw him, he proved he was my fighter. Within a few hours, Ethan was able to come off the oxygen, but he still required medication and Bili light therapy for high liver enzymes and bilirubin. He spent six days in the hospital, weighing only 6 lbs, 2 oz when he came home. 

Our new "normal" life began shortly after returning home. Ethan started to have difficulty feeding and struggled to gain weight. We tried everything to get him to latch onto his bottle, and even resorted to using an NG tube, but nothing worked. Over the next few months, Ethan was in and out of the hospital and gained 13 specialty doctors. 

In November 2014, Ethan was diagnosed with neutropenia (which presents as an abnormally low white blood cell count) and spent ten more days in the hospital. A month later, he underwent his first bone marrow biopsy. With treatment, we can maintain his blood levels, but he will need to get a biopsy every year. 

On March 22, 2015, Ethan was officially diagnosed with Spastic Quadriplegia Cerebral Palsy. Since then, he has had partial removal of his left kidney, tubes put in both ears, throat surgery, a blood transfusion, a GJ feeding tube placed in his belly, and a port placed in his chest. Ethan also has gastrology problems, vision, and hearing problems. 

Today, Ethan uses a special stroller/wheelchair to get around, which is called a Zippie Voyage. At home, he uses a gait trainer walker, special needs bath chair, special needs bike, suction machine, and a pulse ox machine. He is also attached to a feeding tube 20 hours a day. 

We call Ethan "The Hulk" because no matter what the battle, he fights through it with strength. He always has a smile on his face. Whomever he comes in contact with is amazed with his long eyelashes and a bright smile. He loves to be sung to no matter how out of key, though certain pitches do make him cry, so we are figuring that out. He recognizes his family and friends through touch – moving his hands over their faces and hair. Ethan loves the feeling of air blowing on him, and giggles when he feels it. 

Our lovely boy has many more rollercoasters and battles ahead of him, but I have faith he will continue to smile through it. These diagnoses are not going to stop Ethan. 

 

Meet Tristan, as introduced by his mother, Katie: 

"Tristan was an anxiously-awaited addition to our family. We had a scheduled C-section set up for November 2nd. That all changed on our last annual camping trip when we went to close up our property up north. My overnight stay turned into a 3-day hospital stay when my water broke at 7 am, and the ambulance rushed me to the closest hospital, an hour away. Tristan made his grand appearance 4 hours from home at 33 weeks and one day. He was transferred to Helen DeVos Children's Hospital because it was the closest hospital with a NICU. He was on Continuous Positive Airway Pressure (CPAP), but otherwise, he appeared fine. Around 36 weeks (3 weeks old), we lost pulse and pressures in his feet, so they ordered an Echocardiogram, which revealed the scariest truth there was. 

Our tiny baby boy had three heart defects: Coarctation of the Aorta, Bicuspid Aortic Valve, and Atrial Septal Defect (more commonly known as ASD). 

The scariest part was that he needed emergency surgery the next morning to correct the Coarctation. The recovery from this surgery was super intense. He got a Chylothorax, which caused fats to leak into his chest cavity, collapsing his right lung. After a month, we went back to the NICU, where his respirations were between 90 and 120. They did a slew of tests: a bedside scope, bronchoscope, and the last being a heart cath. The tests revealed that Tristan had Pulmonary Hypertension caused by the 8mm ASD, so the next day, he entered the OR for his second heart surgery. They did a rough patch, but left a small 3mm patch in his heart. This recovery was much faster, and it helped his respirations, although they were still high. They were nowhere near as bad, staying between 65 and 80. Tristan's doctors finally agreed a G-tube would be his best bet because all he had for his whole life was a Nasogastric tube, and at this point, all they were waiting for was for him to have a solid eating plan. So, on January 4th, he got his permanent feeding tube. After 108 days in the hospital, Tristan was released to go home on January 10th. 

Tristan is now almost nine months old, full of energy, sitting up, rolling over, babbling, and even trying to crawl and, of course, still fighting Congenital Heart Disease. He's currently on continuous feeds to help him gain weight." 

 

Learn more from these resources:

NICS Awareness Month History

5 Things NICU Nurses Want Parents to Know

Dealing with Pain and Stress in the NICU: from a Neuroprotective Angle

Do you know someone with a Spoonie Story, or would you like to share your own? We'd love to hear it! Send us an email at hello@spooniethreads.com to get started. 

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